Haunted by a Child’s Illness

A child’s serious illness can cast a very long shadow across a family, often for years after the crisis has passed.

A mother sat in our clinic recently, crying because her older child was having trouble in school. She blamed herself. A couple of years ago, her younger child had been very sick, and she felt she had been so consumed with worry — at the time and ever since — that she made mistakes parenting the older child. Behavioral and academic problems were the result, she insisted, and she would not be dissuaded.

I wondered whether she was distraught at least partly because the hospitalization of her youngest still frightened her — even though the child, now fully healthy, was running around the room. Or maybe — I only thought about this later — she was crying because any medical setting, with doctors and nurses and medical sights and smells, brought back intense emotions.

Parents can be haunted by a child’s illness or injury. At the time, they are faced with the terrifying truth that a child is in danger or in pain. When the normal stress responses of the parents play out in extreme cases — and when they continue well beyond the child’s illness — additional harm can come to the family. The emotional trauma of the experience, the parental equivalent of coming through the wars, can echo for years.

Researchers who study parental stress tend to reach for the oxygen-mask metaphor: if you don’t breathe yourself, you aren’t going to be able to take care of your child.

“Parents need to feel well enough that they can then be there for their child, their other children,” said Nancy Kassam-Adams, a psychologist who is the director of the Center for Pediatric Traumatic Stress at Children’s Hospital of Philadelphia. “The hardest thing is self-care.”

Dr. Kassam-Adams is the lead author of a new review of post-traumatic stress in both children and parents after the children were injured, which concludes that about one in every six children, and a similar percentage of parents, experience significant, persistent symptoms. They may have intrusive and distressing memories and dreams, or continue to avoid people or places that evoke the circumstances of the injury, or struggle with mood problems, including depression. If untreated, this can damage the child’s emotional and physical recovery.

It helped, in part, to tell parents that they’d been enlisted in a war, said Anne E. Kazak, a pediatric psychologist and co-director of the Center for Healthcare Delivery Science at Nemours Pediatric Health System in Wilmington, Del. Parents connected to this metaphor: “You’ve been part of the war on cancer, the battle fighting it,” she said.

Some of the strategies and insights gained from this body of research are already visible in most children’s hospitals: a place for parents to sleep, even in the intensive care unit; including parents in so-called family-centered rounds; a staff attuned to interpret a parent’s extreme behavior as a cry for help, rather than a source of irritation and extra work.

But what happens after children are out of the medical danger zone? Many parents continue to experience the physical symptoms of stress — the racing pulse, the dry mouth. They continue to flash back to the moment of the cancer diagnosis, the moment of the very premature birth, the moment of the accident.

“It’s my belief a parent who’s traumatized is always expecting the other shoe to drop, will always be scanning the horizon,” said Dr. Richard J. Shaw, a professor of psychiatry at Stanford.

“The hope for our study was that if we could reduce parental trauma and anxiety, it might help parents as their kids got older,” Dr. Shaw said.

He and his colleagues used many techniques from cognitive behavioral therapy. Parents learned about the ways that stress commonly manifests, and about techniques to cope, like muscle relaxation. They also learned ways to understand and describe what was happening to them.

“Cognitive restructuring techniques help people reinterpret and pay attention to the positive and not catastrophize, developing a trauma narrative of their experience,” Dr. Shaw said.